Little fighter x

Not much to report of last week as Con slept through the majority of it! The doctors started him on antibiotics and some other new meds as they suspected he had the beginnings of VOD, which is a condition a lot of the children going through High Dose chemo get, it causes the liver to distend and not function properly amongst other things, but they odviously caught it in time as we got the news today that they are expecting him to make a rapid recovery!!! He certainly hasn't breezed through this stage of treatment but I had built it up in to such a nightmare that it has definitely not been as horrific as I had imagined, my main worries were Connor ending up in Intensive Care an him being in agony with mouth legions, but he was so good at taking his meds and doing his mouthwashes 4 times a day that we managed to escape those particular horrors, and even his Mucusitus hasn't been too much for him to handle. Our son is such a little fighter, I don't know how he keeps battling through but I thank God( or whoever else is watching over him) for his strength, and we are so proud of him. Best news we have had in a while and a lovely present for Rik on fathers day! Means we will all be home together sooner than we thought however we will still be keeping our fingers and toes crossed as it won't be the first time we have gotten our hopes up. So it looks like the 4th weeks the charm. I even got to see my girls 3 times this week!!! Monday I took my daughter Ella to see Mamma Mia in London, we had a girls day with Riks sister Izzy, my cousin Alison and her daughter Lucy, they loved the show and we had great seats - only 4 rows from the front,they even got me to take photos of them with the cast after. It was lovely seeing ELla having fun, but it was hard saying goodbye at the hospital afterwards, i can't escape reality for too long. Wednesday I did the school run, made the girls dinner and gave them a bath, such normal things but it makes me so happy, sitting on the sofa watching cartoons cuddled up together gives me strength till the next time I see them, and the time went so fast, it wasn't long before i was back in the car and "swapping shifts" with Rik. Saturday I was home again and this time for the whole night, first time in weeks I had slept in my own bed and it was strange, my home is not my home, my home is Room 3, ELephant ward, Great Ormond Street Hospital, but I can't deny that a hot shower and waking up next to my girls has given me a much needed boost!! add that to the news that the worst is over with this round of treatment and my smile isn't forced today xxxxx

20 days:

It's been a week today since I last Rik or the girls, the longest I haven't seen my other half for in 12 years. I miss them all so much, we talk on the phone everyday but its not the same. I've attempted to write this new post 3 times but despite having ALOT of time on my hands while con has been sleeping so much, I just haven't been able to write anything and really I'm still not even sure what I'm supposed to write on a blog, I've never read one before, I imagine that they are supposed to be short, insightful, to the point, keeping people interested, my posts are rambling,sad and I go off on a rant sometimes. The intended point of the blog was to keep people informed of Connors progress but if I'm honest It's also a way of not having to deal with anyone, in 29 years I've become used to bottling every emotion up, i dont like discussing my personal life, i dont like people knowing my business, I don't like attention and my confidence has always been non existent, I still now find it hard meeting new people, and there a lots of new people in my life, those who are helping raise money for Connor just because they are decent human beings, lending their support because they heard Connors story and wanted to help. In this way the blog is a godsend because i can write things, that I would never say out loud and that includes thanking everyone on here, I can tell them how much it means to me, to all of us but face to face, i am useless, im not a "hugger" i dont like to "share my feelimgs" like they do in cheesey hollywood films, i never know whether to shake peoples hand and even then does that make me look cold? In truth the only people I am really affectionate with are rik and our children, I can never give them enough kisses, can never give too many cuddles, being away from them is a daily struggle, I wake up everyday with a achey feeling because I hear the sounds of a hospital ward not the loud noises of 3 happy children wanting to watch tv, or asking for breakfast, there is a saying - that u don't know what u've got till its gone but I knew what I had, i loved my life i didnt need a reason to start appreciating my family more. Getting back to the point:- Nothing major has happened in the last few days, Connors meds have just wiped him out, so I'm lucky if I get more than 4 hours to play with him each day, I am however pretty great at nearly all his computer games now, Con high fives me every time we reach a new level - thats all he wants to do when he is finally awake, that and operation. I reason that when he is asleep he is healing, and cant be in too much pain. I am myself only getting maybe 4-5 hours sleep a night and even then it's broken as Connors machines bleep constantly - letting me know that one drug is done, having another one start straight after, Connor waking up needing a wee,or him feeling sick, but somehow I never feel exhausted, in fact I lay awake until the early hours most nights willing myself to sleep but am wide awake, head full of worries. It's probably because i literally do nothing all day, just read, tidy up our small room, and walk the the short distance to the kitchen and back twice a day, I've counted the steps - 17 there and 17 back. At home when things were normal, me an rik sometimes used to count the hours till bedtime, so tired after a full day of work, school runs, housework, my body is used to being more active. The whole ward is on a kind of "lockdown", there is a nasty flu bug doing the rounds and none of the children on an Oncology ward need that extra worry, so the playrooms are shut, and there are posters on doors asking parents not to stand and chat in corridors or parents rooms as they don't want to run the risk of spreading germs. It's like a prison, but not in a bad way, I actually feel safe here, more relaxed even than when I am home, I know help is only a button away and our room is opposite the nurses station so I sometimes just poke my head out of the door if I'm concerned about even the smallest thing. I've watched Connor sleep more now than when he was a baby, and even back then it was a lot- ive been remembering how lucky we are that he is here at all, there was no cry when he was born, he was a dark blue colour and he had to be resuscitated due to the umbilical cord being around his neck, he was taken to neo- natal for 10 hours after his birth, I couldn't hold him and was worried we would not have the same bond as Ella and I, but as soon as he was placed in my arms, one look at his face was all I needed to know how silly that worry was. Looking at him asleep now, I can see how truly beautiful he is, he looks healthier than he has done in months despite what is going on inside him, his cheeks are less sunken,his hair has grown back a little and his eyelashes are full again- he always had eyelashes that would make a grown woman jealous! But there a few hairs on his pillow so I know it won't be long till he is a baldy again, he doesn't mind he says. I am hoping to see rik tomorrow, and my girls on Monday, I have tickets to see Mamma Mia with Ella, her last day of school holidays and the only day I will have gotten to see her, Monday will be a hard day so will be glad of a distraction, it will be the 11 th of June- exactly six months since COnnor got diagnosed, I can't tell you how fast it has gone, I know how much I've missed, especially of how much Lola has grown, in January she was 3 months into her 1 st birthday, on Monday she will be 3 months shy of her 2nd, I tell myself that Connor is the one who needs me more but as a mother, you can't help but feel guilty, it shouldn't have to be like this.

Jubillee week:

During those sunny days last week, I had the bright idea of using some of our wedding savings to book rik and our girls into a local hotel for the jubilee bank holidays, I thought it would mean less time spent in the car stuck in London traffic and more time together as a family, the girls love coming to see Connor and it brightens his day to see them. I should know by now our luck is crap. Sunday morning came, Ella was excited to see the hotel, it was only a holiday inn bless her but it had a small swimming pool so I knew she was really looking forward to it, and it was only an 8 minutes walk from the hospital - added bonus. By the time rik had driven up here, he was starting to feel ill, like he was coming down with flu at the same time I was told Connor had an influenza virus, so he wasn't allowed any visitors who were the slightest bit sick as he has no immunity to fight any germs, it also meant his sisters shouldn't come up, especially Lola, at her age she could be a carrier for a lot of bugs. It seemed pointless using the hotel,but although they sympathised with our situation they couldn't refund our money. So from Sunday till Tuesday we were round the corner from each other and had to stay apart, the weather was awful but the girls still managed to go to London Zoo, and Hamleys, they were also in the pool for hours everyday, so at least they had a nice few days. It is now Wednesday afternoon, we have had no visitors since Saturday, Con and I are missing rik and the girls like mad, Con has slept 16 hours a night and then for hours during the day so im at a loss as to what to do with myself,im so busy at home so used to having a routine that im struggling with all this time on my hands. I've read 5 books, spent hours googling every Neuroblastoma site i could find and when Con is awake we play Ratchet & Clank on his PS3 until he wants another another sleep. Apart from being so tired I think Connor is coping well with the effects of high dose, his mouth isnt too sore, he isn't using his morphine pump that much, we have weeks left for things to deteriorate but I'm hopeful.

Added stress!

Connor has been really unwell over the last few days, he is being sick even with the mixture of anti- sickness meds the doctors have prescribed, he won't eat or drink and just looks so sad all the time. Wednesday night there was blood in his vomit which the doctors think is the beginning of Mucositus, so we are literally waiting for the sores to start appearing in his mouth and then he can have his morphine pump back. We were warned this was going to be a really testing time that Con was going to struggle and we would have to tough it out but i cant explain how hard this is, feeling so useless and just waiting for signs when he goes further downhill. The only upside to this week was getting Connors story in The Sun newspaper, a double page spread of him in his favourite superhero costumes, I'm hoping it will do loads to boost Connors appeal and raise awareness of the awful thing that is Neuroblastoma, awareness of all rare childhood cancers. I popped home for a short time yesterday afternoon to do the school run, spend time with the girls and do normal things, make dinner, help Ella with her homework, but instead spent hours on the phone and writing letters to our local council, it makes me so mad that I have to waste my time on this crap!! To cut a long story short - our tenancy expired in the house we rent in March and with me not being able to work, and rik being self employed and sharing our time between home and GOSH, we cant afford to live there anymore, so after 8 years of renting privately, of paying other peoples mortgages, and moving 5 times since Ella was born, we decided enough was enough. Why should we struggle? why shouldn't our children have a permanent home? Our local council thinks differently - I have in writing that we are NOT a priority! Stress stress stress. Then there's bills to pay just to prove that life goes on even tho ours is falling apart. Weve also had to deal with people overstepping the mark and causing us personal problems, harassing family members who are helping at home with Ella and Lola, causing trouble between our two families, texting messages, how do people live with themselves? Isn't it odvious that we are all going through the most devastating and horrendous time and just want to be left alone, it's not like we haven't got enough to deal with! Last night i found a post relating to Connors appeal on a Music fan site, at first I thought WOW, word is getting out- great! but then I read more and it said this person was a family friend whose daughter babysits my children? Red flag alert!! My children have only EVER been babysat by their NANS or my sister. It went on to add that if they were having trouble donating to our charity site then they could donate via this persons PayPal and they would pass the money on! I couldn't help being suspicious so I emailed this person who then apologised for taking it upon themselves to embellish their relationship with us, but did it for the right reasons and just wanted to help, apparently no monies were ever received and they deleted the post. I initially felt bad as we have had so much support from strangers, people who have never met us who have given up their time to help us raise money, so this persons intentions might well have been honourable but in this day and age I'm well aware how many people there are trying to make a quick buck on the back of someone else's misery, and if I can't protect my son from the ravages of cancer and chemo, I will protect him from people trying to use his suffering as a money earner.